Advocating for Cardiac Caregivers

Caregivers of heart patients carry an oversized burden in the preparation for and recovery after heart surgery. These essential loved ones see patients through mental and physical challenges, but they don’t always get the attention or help that they need.

Better Recognition and Awareness

As more people live longer with chronic conditions, patients turn to spouses, family, and friends for hands-on support, both for immediate needs and for long-term care. In some situations, like a cancer diagnosis, these caregivers are already acknowledged members of the care team. Those who support heart patients, though, have historically been under-recognized.

More recently, the importance of a cardiac caregiver, especially after heart surgery, has been acknowledged: When competent caregivers are present, heart patients recover faster and are better educated about post-recovery life. The American Heart Association is now leading the way in recognition of and resources for the essential people, often loved ones, who fill this important role.
Caregivers—both men (up to one-third) and women—actually take on multiple roles to make recovery a success:

patient advocate, the confident voice for the patient to multiple health care providers

prime communicator and recordkeeper, the liaison to other family and friends, workplaces, and insurance companies

What Do Caregivers Need?

These complex roles supplement and even replace professional care, like home nurse visits, but they come without organized training, and their practical burden is compounded by emotions like fear or anxiety about the heart patient, and a lack of confidence in caregiving ability.

A plan: Whether it’s an extensive care calendar or a daily checklist, having a schedule helps organize meals, groceries, medication times, and more. Because caregiving can last from just a few weeks after minimally invasive surgeries to much longer after stroke, for example, it’s best to keep the calendar open ended and take each day as it comes. Planning—even briefly—for serious complications ahead of time, too, by preparing advance directives or living wills removes stressful unknowns if urgent situations do develop, and it gives the patient and caregiver the chance to talk through surgery-related anxiety and recovery concerns.

A hand: Neighbors, friends, and others can support daily needs like meals, but it’s also helpful to schedule people for caregiving duties. To give their balanced best, caregivers need to stay healthy and maintain energy with good food, exercise, and time to rest away from being needed. When volunteers are unavailable, especially for long-term needs, caregivers should not hesitate to ask nurses, social workers, and other providers for support in the form of day programs or visiting health aides, for example.

Education: In addition to overseeing daily needs, patient caregivers often are expected to recognize and identify signs or symptoms of heart problems or infections and communicate these changes with the doctor or nurse. However, it’s not unusual for caregivers to know very little about the condition or recovery, and this uncertainty is a major stress for caregivers. By participating in office visits from the very start, caregivers can use doctors, nurses, and pharmacists as a reliable resource. Some example questions for providers involve how long recovery might take, what the patient can and can’t do alone, and what sorts of health monitoring (such as temperature and weight changes, blood pressure measures, or medicine reactions) are expected.

Avoiding Burnout

Much like the patients themselves, caregivers have intense stress and frustration after heart surgery and longer, as they help the patient transition from recovery into long-term lifestyle changes for heart health.

Without balance and support, caregivers risk becoming overwhelmed and experiencing burnout as a result of the continual and too-demanding physical and emotional load.

Symptoms of burnout include changes to sleep and diet patterns, and sometimes reliance on sleeping pills or alcohol; loss of interest in caregiving or hobbies; difficulty concentrating and losing control of your schedule; poor self care; feelings of isolation or hopelessness. If these problems are not addressed and linger for two or more weeks, clinical depression can develop.

being realistic about what you can accomplish: keep tasks down to just essentials, and know that some things are out of your control. Focus on the present day.

taking ownership of your caregiver role by setting the pace of tasks and by being upfront with doctors about your role and about practical issues like appointment schedules

acknowledging emotional stress and releasing emotions in a healthy way (like using “I” messages and being a patient listener)

asking for the help you need (even if the patient prefers your care) and maintaining personal interests and quiet time to recuperate and stay connected with outside life.

Help Is Available

Caregivers are never alone. In 2010, Mended Hearts formed regional Caregiver Committees to include the well-being of patient caregivers in their support groups and outreach. The American Heart Association has developed an online portal, the Support Network, for caregivers to connect with each other through social media, to watch educational videos on their own time, and to ask questions of specialists in online chats—the three most-preferred methods of support requested by caregivers instead of take-home reading material.

Nationally, but not specific to heart care, the Family Caregiver Alliance supports family members or friends who voluntarily take on the role of a care provider. The Patient Advocate Foundation supports all types of caregivers as they learn to be the voice for the patient to insurance and health care providers, just after surgery and sometimes longer.

Health care providers now recognize the importance of successful caregiving to achieve better health for heart patients. What do caregivers themselves view as key to success in their role? Education, honesty, and trust.

Nicole Van Hoey is a freelance writer and editor for consumer and professional health publications. She underwent open heart surgery in August 2016 and writes about the experience, including cardiac rehab, for HealthCentral. She can be found on Twitter @VHMedComm and writing about family life after heart surgery at Bloglovin’.